coffee in baden baden germany anyone ? Removab UPDATED

so here goes another alt therapy, any comments for or against.
did you notice he would be feeling happy to send me the cost estimates. godlbless then, i just wonder if i will be happy when i see them.

time will tell.

so has anyone else research actually doing this treatment. its a shot into the peritoneal cavity as i read it, which is where most of my tumour burden is located.

yes in have the family passports together and its school holidays.

i did some homework and this german center thats offering this also treated fara, may she rest in peace. so i have done some digging.

hugs,
Pete

from a german doctor re Trifunctional antibody Removab

Thank you for your query regarding treatment options at our clinic. Having looked at your results we would make the following suggestions:-
A course of treatment (x3 systemic doses) of the tri-functional antibody Removab would likely be very effective. This is a new type of antibody which causes a rapid and significant immune response against the EpCAM receptors, which are highly expressed on gastro-intestinal tumour cells. This causes rapid killing of tumour cells, together with side effects much like a bad flu – aches and pains, fever, headache etc, together with elevated liver enzymes and CRP. We are very experienced with this and can manage this supportively. Another benefit of this treatment is that it activates an ongoing T-memory cell response, stimulating and targeting your immune reaction to the tumour cells much like a vaccination. It will get at the tumour cells wherever they are. Other options would also include low dose chemotherapy in combination with whole body hyperthermia as well as immune stimulation. We always provide a comprehensive supportive program as well. The tumour cell count is not too high, but given the rising tumour markers and the PET result, it is important to intervene soon. We would be happy to send you a cost estimate.

im a lurker here (in fact I think my only posts to date have been flames, which is probably why Im not a regular) and although I used be close to Baden Baden regularly, now Im at the other end of Germany.

Whatever - Im essentially German/English bilingual and have good contacts in the oncology scene here, so if you need support researching these docs or the clinic they are at, let me know.

As an initial comment, you may know this, but the (German language) report issued on the release of this drug states clearly that a) it causes fairly massive side effects, so the patients treated need careful selection, b) Its intended, "on-label" use is palliative for malignent ascites and c) the studies done so far show no overall survival benefit. This sint regarded as an "alt" treatment, unless your intended use is off-label.

thats really really kind.
please pm me your email, when i get a reply i will forward it to you.
thanks for clearing up the on label/ off label use.

the answers here are why this site rocks. we are a very caring and powerful network with far more experience than a room full of oncologists. now i have great respect for the oncologists and the challenges they face. but if this drug has some merit. why did 3 top oncologists not consider it.

maybe i am just going for the palliative on label use with the hope of cure, I know wishful thinking.

i figure its just hipec is alot of pain and suffering, ok curative intent.
given i have at least a 4 week window before surgery, i could try this drug and see.
if it does not work then nothing lost, but say if it helped, say if my markers really reduced and my next pet was clear, well then hipec's risk/benefits could be assessed.

it really depends on the onco genes of my tumours, the peritoneal injection aspect of this i like as well.

thanks again for the german translation.

if i go ahead i will post the results here, as long as it does not kill me. but then you guys will just have to assume it was the last therapy that did me in. either way the cancer did not win technically.

"I did some homework and this german center thats offering this also treated Farrah, may she rest in peace. so I have done some digging"? Hopefully Results WILL Vary... :-)
Would you go to Germany for Removab? Ah-Ha! I just did some digging and it appears it's in clinical trials in the USA and IS available in Europe but is it available in Australia? I found this Removab link.

Just reading what they sent you, I didn't notice if they'd do anything other than give you Removab. Did I miss something? It seems (thankfully IMO) that the new therapies are focusing on targeting cells with cancer with the intent to do as little damage to healthy cells. They really have come a long way. I doubt I could have done my Erbitux and Irinotecan mix for six years if it had been straight chemo. I'm glad to see you open to doing this, I know you will try whatever you can to beat this. I understand and support you in your efforts.
-Phil

PS: I've GOT to know this Pete. What web browser do you use and what device (iPad, laptop, desktop, cell phone) do you use to write your posts?
Inquiring Minds Want to Know (or at least I'd like to know)

you did not miss anything, but from a drug name and the internet well and a few friends here , its pretty easy to workout a treatment strategy. sorry, but who has time to wait the doctors.

I just emailed the australian company who applied for the orphan drug status and requested its use. thats really really interesting, i am interested in there response. now not one of the 3 onc's i goto has suggested this novell therapy. but a german onc yes.

we can ponder this over a virtual ketogenic dinner one day.

did you read the orphan drug stuff. not profitable to sell, so its not marketed. a possibly life saving, operation differing therapy denied.

time will tell if this is a fizzer. but its a great suggestion, mind you the side effects look like fun not, if this saves my butt then its your fault i am on here with all my spelling mistakes for along time to come and it partly your fault i hope.

hugs,
Pete

ps i use xp with chrome and my android smart phone with its generic browser.

I hope your spelling continues for another 20 years. By then I'm sure (or I HOPE) the spellcheck features will be better! :-)

I did notice the Orphan stuff, in a word it STINKS. I know I've mentioned my niece who works for Regeneron and her involvement in developing Zaltrap. Well, one of the members of the Board of Directors insisted that a drug they developed that wasn't marketable but could help a small group of people in Africa be put on the market anyway. He felt that they couldn't, in good conscience, withhold it knowing it could save lives.
My point is that there are some companies and people (aren't they really one-in-the-same thanks to Citizens United?) that still put people ahead of profit. True, they are in the minority but they do exist. It's not Urban Legend! All it takes is for one renegade company to pursue the developement of a drug which could lead to a major breakthrough in the fight against cancer or other diseases.

its the german onc thats suggested a drug that legal in germany, not here in aust or usa.

so the 5 onc's i have seen here, well not treatment options besides chemo till i drop oh sorry yes 5% survive 5 years. screw that.

so yes i will email and call top 3 onc to say i am going to germany seeking an opinion on its merits for my case.

i am not even giving them the treatment option to care for me, screw them they have had the chance, i have asked them every consult for any other options, any other drugs.

with hidesight i should have gone to germany january when cea was 17 not 81. they have experience with the drug and its application and side effects.

even if i save the airfares and stuffing around, effectively the drug cost will be the same. what i want is clinical expertese, not onc's here [layiong catchup because they dam well drop the ball and let the cancer score a for touch downs. but the games not over yet.

but their lack of international awareness and to me seems tragic. hello the idea to dish out palliative chemo when a more aggressive radical drug may provide survival benefits, well that just sux.

the crux of the issue is does removab have merit for my case. assuming the german onc is not a greedy uncrupulous idiot. i suspect it reallydoes. the drug approved germany for on label palliative, but it seems may be applied to me, which in a sense is palliative even though i feel far from dieing. yeah but who know with cancer anyway. the only thing that certain here is that i cannot spell.

i will see if my hopes from the german's pays off, expect a post card from baden baden with me and the kids in the hot springs. the passports are ready and the wife has agreed. i still need the quote.

I am pissed about my local onc's . all the effort i have put in and to be blindsided.
really let down by local onc's and local alternatives.

i think the issue i want to discuss is our doctors reluctance to admit where their limits exist, they want to keep control of the patient doctor relationship. for a subset of patients that control is not in the patients best interest. my case in example.

i think i needed to get this little vent out of the soul. I am a quick learner and a little unforgiving when i see the magnitude of there collective screw up's. the prentence of pretending to know whats best.

my lesson is to trust doctors less and to get more opinions. i should have keep up my correspondence with the german doctors continuously since january. i let those relationship slide as i was overwhelmed by local medical opinions that were not getting the results i really needed.

i had given up getting a response from these guys in germany, lucky i was not critically ill or i would have kicked the bucket.

no i am just living day to day having fun with what amazing knowledge we have around the internet and here of course.

effectively we are like one super intelligent cancer patient that collectively never dies, just parts of us drop off, but as a community tragically we are immortal.

so no, hipec has a firm conventional offer on the table. but i have not been given a letter of acceptance to the list, and when i get done , well thats up to god and the doctors and relative merit and need. i will take what i am given. i am not going to push my way onto the life boat. but i am acutely aware i am growing these little suckers, and they just have to go.

I want to do the ukraine and hyperthermia and low dose chemo and removab. it should not knock me around to much and might clean me up a bit prior to surgery. but i will run this past the surgeon about my idea for a german holiday with the wife and kids.

the clinic is familiar to me, and many friends at home have contemplated going, but never done it. they are all dead now. so no point sending a body over there, might as well get used to these guys.

yes i have agreed to limit the number of doctors and naturopath to 99 total.

not sure how some of these treatments could jeapardise my hipec, but i don't want to prejudice my hipec surgery, in fact i want to enhance it. thats the point of ukrain and removab.

heck i have not even seen a cost estimate and a detailed hyperthermia breakdown and the ukrain dosage breakdown. its my idea and research to have ukrain injected into the peritaneom. you know its exciting to think i can try some of these techniques csan be adapted from one drug to another.

the issue with the peritoneal mets is they get pooor blood supply, so systemic chemo is ineffective ie 5% survival quoted for 5 years chemo only.

so using the preop delay, i see as a window of opportunity.

i am back in mainstream boots and all. but is hipec mainstream. here one of my onc just prefered 5fu/avastin , but i know he has seen the bad side of hipec and on balance he advised chemo. i had to push him for the referal, i actually never got. i had my alt doc do the referal to hipec surgeon. the complexities of politics around these treatment decisions and patient ownership and i think care and revenue stream all come to bare.

i cannot go to far wrong when i float my ideas out here, i get plenty of great caring insightful comments like yours.

its just baden baden has hot springs and its school holidays. i am a traveller at heart so given i got 4 weeks in hospital if i beat the 1.6% op mortality rate, then i got at least six months post op chemo folfox or irenotecan. so not alot of fun a head of me, i figured a holiday would be fun and i might kill 2 birds with one stone.

I am also considering visiting the danish doctor who has put me onto some very exotic treatments, post here over the last 3 weeks.

most importantly my son wants to go to lego land, its been a pretty hard year on the kids and wife so a few extra weeks of school and a euro vacation could be fun.

well intially i would say yes, but now i see the limits of the medical care i have recieved, i think, continually questioning doctors, research and myself is the way to go for me. i don't trust doctors to anything beyond where they have clincial expertese. so if we are trying to beat a very demanding foe, then to me it seems i got to cycle through lots of pathways to find the one that works for me.

why did it take me 10 months to find removab?
why was it 10 months to find the peritoneal mets ?

even the hipec surgeon said i should have had other investigations to find the rising cea.

now i asked the onc's , i asked my colorectal surgeons every consult about a laprascopic look around and no effective suggestions. my gut feeling was correct

so i will ruthlessly determine whats in my best interests, not the doctors, not the hospitals. i am fighting for my life and these quacks just ain't even getting into gear.

The chemo regime that i was on entailed an infusion of 5Fu each tuesday virtually for a year. Every second tuesday for the three following days I would take a levamisole tablet at eight hourly intervals. Ie 9 tablets over the three days. The levamisole weeks were not nice,I was always nauseas and nothing ever tasted as it was supposed to. I never worried too much about the chemo my oncologist believed I had almost no chance without it.
In the early days of my ca (1998) I could not find a great deal of information about levamisole and as far as I was concerned it was still in use till now. I only found out the other day that it was discontinued in the US in 2002 and Canada in 2003.The reason given was that it had some serious side effects and that there were better drugs. I have looked into it a bit further and it appears that its use was in fact banned because it was known to cause fatal side effects.
Now I don't know how I should feel. Should I feel angry because by using it they may have killed me . Or should I feel happy that by using it I am ca free. Or should I wonder if it only saved me so that I can die from long term side effects of it.
This was a drug that was used for many years and had a lot of research done on it. If used in low doses it did nothing,if used in large doses it killed, If used at the correct level it could kill ca or it could kill you. The thing is that as we know from unfortunate experience cancer is not easy to kill . The criteria for anti ca drugs is that they have the ability to kill ca without also killing the patient. That takes quite a bit of research so I believe that If I have to have ca treatment I tend to chose the one that has had the best scientific evaluation.
Now I am not a great fan of doctors. If left to their own devices I believe that they tend to underachieve. Having said that ,they know a great deal more than me about things medical than I do so I continue to use doctors but I ask a lot of questions and If I don't like the answers or feel confident that they have confidence in what they are doing I will not go there. At the moment I am not letting them treat me for arthritis and kidney disease because at this point the conditions are not life threatening but some of the treatments are.
It is a fine line to walk,when and if the conditions become life threatening I will reconsider my options.
I do know that with cancer I chose the option of chemo and when I chose that option I made myself a promise to have no regrets.....Ron.

well the shite is hiting the fan here.
even though the house has been cleaned up my wifes hoarding has been reported to the government.
in cancer land no answer from hipec team despite calls.
now i have in principal committed to joining a tour to hallwang german clinic for removab and other goodies. waiting on a detailed cost estimate.

i had an amazing one hour consult with grace gawler
http://gracegawler.com/Institute/about-1/consultations-2
she is running a tour leaving 6th october and will ensure i get the best out of the considerable investment in my
health that comes with accessing these services.
returning on the 8th november.

my reading of removab is positive, my use off label and guided by clinical experience
http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Information/human/000972/WC500051809.pdf

my preference is to try the german clinics to see how much tumour action can be cleaned up by removab/hyperthermia and then if needed use hipec to sort out any residual activity.

hugs,
Pete

ps another great day, but i am feeling the pressure. i played puppets with the kids tonight. thats the highlight of the day.

PPS seeing my onc tomorrow, getting his opinion on removab and clinics assessment and plan.
I can feel the warmth of the hot springs of baden baden now. i just need a relaxing hot spa in a beautiful location with some cancer stuff on the side.

Good to hear from you, Pete. Continually praying for everyone here. I hope all goes well in Germany. Guess there's still time to do the Hipec. If you havent heard from them yet on the surgery......then i dont see why you wouldnt want to keep researching, if from what you find out on the tour that it has delivered results. I hope what you learn is truthful and full disclosure. Please be safe.

these are really the toughest days, i feel like buckling under the pressure.

my onc today said he knows the onc overseas, that they are to be respected and he said you can always try what available here locally if needed when you get back.

i am the third of his patients going on this current tour, so i will be travelling with like minded cancer patients from sydney, half way around the world. i thought he would say i was foolish, but I felt somewhat reassured that i am heading to where the worlds best care maybe found.

time will tell. i hope these monoclonal antibodies and the other treatments.

getting my chemo port back in 7am tomorrow, called the german clinic, chatted with my newest onc breifly. getting the port in is a good idea.

hugs,
Pete

ps if the cancer does not get me then these steamed sheeps brains will. they are the worst i have tasted. i have asked alt doc 6 if the sheep brains are eseential. he said yes. you know some good old fashioned chemo is not as scary as it used to be, now i eat sheeps brains and sea cucumbers.

what next mouse antibodies ? well actually yes. 9 days and counting to the beginning of another experiement. removeab

this is a status update for my oncologist backhome and asking about my her2 status.
about 11% crc are her2, if i am i have some extra options.

the treatment if i am her2 positive involves apoptosis inducers, not precisely sure on the details, but the therapy can occur now removab is finished. it shows the principle of keeping your local care team in the loop so that a continuity of care can occur when i return home. so i get info i need hopefully, they may have to retrieve the tumour sample from the lab.

I have successfully complete one chemo embolisation with mitomycinin and avastin and three rounds of removab. a few more localised chemo embolisations are planned to target remaining peritoneal mets, lung and liver mets subject to the degree of response with removab.

going forward I will be having dendtretic cell vaccine made using the most effacious version of ndv combined with an apotosis inducer antigen developed by tim from sydney in aigt. David if you know Tim, let him know his great research is being tested on a fellow sydney sider who is very very grateful he shared his protein description with doctor nestlehut team. the optimum time frame dendretic cell vaccine and immune system preparation and monitoring for me is 4 months per detailed discussions research scientists at the dendtretic cell clinic.

I also need to under go serious chelation to get the platinum out from my folfox.

David, you may need to contact eva segalov to obtain my her2 status if its possible. please pass on my kindest regards to her and alison her receptionist. I will bring then some flowers when i am in complete remission, i am not coming home until that occurs.

David, would you mind letting professor Morris know that I am still in active treatment here and that I expect to be here until after Christmas

I hope you don't mind being my point of contact while in therapy here, but as you would be my oncologist when I return I feel its professional to keep you updated. If you are ever interested my blog is updated each few days with my obsessive research and whats going on.

you always care and follow my crazy adventures, i put this together for you and also for an amazing doctor who cured a man of metastatic using combined chemo, surgery, chelation and advanced supplements.

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